Monday, January 10, 2011

Today I'm thrilled to share a post from DeeAnn Lancaster (left), an American mom who is further along the parenting road than some of us. Here's how DeeAnn describes her son Cody, 29 (right): "Cody has CHARGE Syndrome, is blind and autistic. Despite his disabilities, he is a very happy guy with a personality that seems to draw people to him. Some of Cody's favorite things are swimming, bowling, playing BINGO, and spending time with family. He loves classic rock, holidays and eating macaroni and cheese. Cody hates going to the dentist, eating ice cream (or anything frozen) and bees." Thank you for sharing your wisdom with us DeeAnn! Louise

'Good things can happen'By DeeAnn Lancaster

My son Cody was born with multiple disabilities. Doctors said he wouldn't live two days, and then we were told he'd never make it through two weeks. Later on, we were informed that Cody wouldn't live past his teen years and due to many complications and surgeries as a tween, we believed this. Cody proved us all wrong. He is now 29 years old.

Life, at the moment, is good for our family, but the journey has been far from easy. When Cody was four years old, my husband quit his job, and we moved to Oregon so Cody could receive a better education. When he turned seven, and after going through a Due Process Hearing with our school district, we made the most difficult decision of our lives and let Cody attend the Oregon School for the Blind. This was very hard for us because we lived about 60 miles away from the school and Cody, at the young age of seven, had to stay in the dorms four nights a week.

Our family moved to another state when Cody was 16 and because of our location, we had no choice but to once again enroll him in the public school system. Cody attended a local high school and really got to experience inclusion. He had some very amazing peer tutors and made many friends. Although Cody didn’t receive a diploma, he was able to attend the graduation ceremony with his class. The entire arena stood and cheered when Cody was presented on stage, making this is a monumental moment for our family.

While most of his peers went off to college, Cody went on to 'Post' High School. During this time, his dad and I searched and found a Day Program we thought would be a good fit for him. Cody has attended this Day Program since his twenty-second birthday and absolutely loves it.

Based on my own experience of trial and error, if I were to give advice to parents of children with disabilities, it would be:

1. More than ever, learn to trust your parental instincts. One particular instance comes to mind when I did not trust my intuition. Cody had been in the hospital for 18 days when he went into respiratory arrest. At that point, doctors finally transferred Cody to a children's hospital in Portland. I remember telling the medical professionals that I thought Cody's shunt was malfunctioning, but they ignored me and continued testing him like a guinea pig. I have often expressed to my husband if I could turn back time, I would stand on the nursing station desk and shout at the top of my lungs to demand someone listen to me. Do not let others, doctors included, dismiss your intuition. Stick to your guns to protect your child.

2. Try not to worry over things you can’t control. Worrying can be beneficial when it prompts you to take action and solve a problem, for example, researching information and becoming knowledgeable about schools, day programs, doctors or legal issues. But when you become consumed with “what ifs” and worst-case scenarios, worry becomes a problem.

As I look at the past, I find it amazing that I have stayed (somewhat) sane. Do I wish things would have been different? Yes. Of course I do! I wish Cody would have been born with a healthy body. However, the experiences I have had because of my son’s disabilities have made me a better person. Cody has touched the lives of many, many people, some I may never know and others who enlighten me by expressing their feelings with kind words like this, written by a worker leaving Cody's Adult Day Program:

"It's my last day today, and I wanted to do something special for Cody because he's my absolute favorite client. There were a lot of days when Cody was my reason for coming to work and I'm going to miss him a lot, so I made this mix CD for him to keep, of songs that remind me of him, or that he really likes. Thanks for everything! Katie Johnson

I want to help parents understand that good things can happen after their kids leave high school.

I started my blog, Snippets 'N Stuff, in hopes that the experiences I've had, both good and bad, will be beneficial to families in similar situations. You can learn more about Cody and I there.

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comments:

Thank you for this lovely interview. Those of us with "older" children with special healthcare needs are often isolated, serving as mentors for those just starting on the path but not having anyone to turn to ourselves. I look forward to reading your new blog and hearing more about your terrific Cody!

Lovely post. I'm a huge fan of Cody's wit and wisdom and I thoroughly recommend DeeAnn's blog for those of you who haven't read it. I agree with Elizabeth: the focus is often (understandably) on parents of younger children and those of us with older kids (mine's 18) can feel left out. Nice to hear 'our' stories too.

I love your second piece of advice, that was something I could have done with a few years ago. Also it's great to hear from parents of adult children, there is very little to read about after the childhood years, which is a little disturbing.

It is so nice to know more about Cody's history and what makes him tick. I have thoroughly enjoyed reading your blog and now I can have a point of reference when reading it in the future. Thanks for sharing!

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.